I write as an outlet, as two of our children battle cancer, positive for Li-Fraumeni Syndrome. I cannot say how often I have heard the phrase, "I cannot even imagine..." but hope to give a glimpse of what this is like...and to reassure you that it is not all bad, despite the challenges.

Tuesday, July 2, 2013

Mother-of-four day, average pediatric cancer day, or LFS day?

Some days are 'normal mother of four' days. Some days are 'normal cancer' days. Some days are LFS days: We ratchet it up a notch for those.

So, we are blessedly, and most gratefully, home. And we have no immediate oncological worries. This makes it, upon waking, quite possible for it to be the first sort of day: a 'normal mother of four' kind of day.

But, as I would point out, today I woke at 4:30 am...with the vague understanding that something was amiss. I walked into Brent's room, and realized immediately that I did not flush his line and unhook him at 1am, like I was supposed to. This was because, as I soon realized, I neglected to plug in my phone... which was obviously dead, failing to alert me as it faithfully does nine time as day to what I must do antibiotic wise.

Ahhh! I unhook, flush, and heparin... only to reflush, and hook him up a mere 2 1/2 hours later, with the new bag of vanco. Such is my life.

This now qualifies as a cancer day, because while this is not active cancer nonsense (Thanks be to God!!), it does, however count as cancer aftermath. I want points...although we recognize that they are not so different: parent points, spouse points, kid points...and we actively tease that they are all redeemable for nothing in our house. Collect all you would like! :)

So, I kept the Vancomyacin train running on time. Kudos to me! I can collect a bazillion points!

But, of course, it cannot end there. We aren't those sort of underachievers.

Lauren has scans on Monday, July 8th. I will most gratuitously borrow from one of my brilliant LFS friends and leave the annotation completely to her wishes: LFS could stand for 'Living For a Season.' We do quarterly scans that make living a seasonal affirmation...and God willing, one that we Ramers might continue without chemo, radiation, surgery etc... Our 'season,' well... it is upon us.

This would make it an LFS day alone. But we do not simply indulge in such episodic anxiety. We Ramers need to add something more. So, on Friday, I got the call... from Make a Wish.

Make a Wish is a wonderful organization. I have a whole bunch of text that I put together after Brent did his MAW a few weeks ago. I haven't had the time to put it together with the photos (shame on me!!) but, even without this, let me just say that they do an amazing job with kids in a tough situations. Lauren, with the whole 'Brain Tumor thing,' qualifies as one in a tough situation, without being at all understated. We do a lot of understated in our house, for the record.

Because failing to do so, we would be absolutely certifiable.

So, Lauren wished to be in a movie, when she met with her wish granters several months back. She is very Hollywood, comfortable speaking in public, and something of a ham. Just saying. So, I think this is a fabulous wish for her. The mere thought of this would make me personally throw up, but to each to their own. And, as this is about Lauren, she would love to be in a movie. We were advised that such a wish could take some time, based on character type, and movie available etc. etc. Lauren was good with this. She, as I have mentioned, is a pretty patient girl.

So, we received the call on Friday, that there was an opportunity for Lauren. It was not in California, as she had requested, but NYC. I had goose bumps. Had it been in in California, I would have shot it down outright, knowing of our pending surgical plans on a different coast.

"Really? When?"

" 'On set' July 21st"

I didn't know what to say. We would already be there for Brent's surgery on the 18th. I should remind you that we have no idea what is involved for Brent (a 3 hour surgery or 12?), or how long he will be at MSKCC. (we are perpetually surprised) We are generally comfortable with the 'leap of Healey faith.' It has really worked for us so far. But in LFS situations, this ambiguity adds an additional challenge.

Do we commit to such an opportunity for Lauren? Should we? We do not know if Dr. Healey intends to do reconstruction or not. It sort of makes a difference. And not just for Brent. Further, it is un-askable at this point, of Dr. Healey. We recognize that it is a 'game time' decision on his part, and the outcome is utterly and completely uncertain. Damn you, crystal ball!

I deferred to Lauren. When she got back from oncology camp (huge hit, btw!) I told her about the call, and the opportunity. As well as the limitations. She immediately said that she didn't think it would be right for her to be having fun making a movie, if it was at all possible that Brent would be in a hospital...and couldn't enjoy it with her. She has a pretty strong sense of family, that one. She wasn't interested in theatre camp either, if it meant being here in Brecksville, without the rest of the Ramers. Her preference was to be together in NYC, with no 'special' fun planned for her.

This possibility was something that we had planned for back when we had the understanding that Brent would be a minimum of 6 weeks in NYC. For the second surgery, we thought that Dan would bring out the rest of the 'Nation,' and we would be together for a period of time, giving Brent an emotional boost for the strong finish. He got a reprieve, in coming home for a few weeks in the middle, but the benefit of being together, for Brent, for the rest...it is palpable. We got this time together, like the three (or 6) musketeers....all for one and one for all!

There is part of me, that understands the logistical challenges (or nightmares) of this solution, of taking 4 kids to NYC for an indeterminate amount of time. They are not small. But when you consider the benefit, well, it is not even a close call. We will do what we must, that which benefits most. Together, well that seems to benefit most. So, we will make it happen, somehow.

Make a Wish, well, it should be simple. Your child wishes for something, and because they have a life-threatening challenge like cancer, this fabulous organization tries to make it happen. With LFS, even the beautiful, kind and wonderful things...well, they are more complicated. I am blessed that my daughter recognizes our challenges as a family...feels them, and responds to them appropriately. And my hope is that she has a wonderful wish, when the time is right, for her and for our family.

May next week's scans bring the blessing of another season to plan such things. And to wish. And to be together as a family.

I do not take such things for granted. It has already been proven that we cannot afford to. But maybe that is the point, or the emphasis, in the blessing.

About Me

Our pediatric cancer adventure was complicated by the discovery of a genetic mutation (Li-Fraumeni Syndrome) which predisposes two of my children to all forms of cancer. While Brent, now 16, battled osteosarcoma (bone cancer), we found that Lauren, now 13, had a rare brain tumor. Since our initial problems in 2011, Brent developed two subsequent cancers (Metastatic melanoma and AML--a leukemia that required bone marrow transplant) and Lauren had a second brain tumor removed.

I share both the challenges and the blessings of this life, pretty freely.